Giana's Story

Images Captured by Dawnette Walters Photography

When Tiny Light Giana smiles it lights up the whole world. For parents Michael and Shelley, that ray of sunshine is reason enough to get up each and every day. 


Giana was nearly six weeks old when her mom and dad found out she had several serious medical issues. She was diagnosed with isolated lissencephaly (Type 1), also known as “smooth brain”. It’s a rare disorder resulting in a lack of development of brain folds and grooves. This means Giana will only function at the level of a five month old baby. She also has microcephaly, or “small brain”, so her head is much smaller than the average three year old. Giana needs to be on a ventilator to assist with breathing and she is on a number of medications for a seizure disorder.


At first, her parents were devastated and angry. Then one morning, they woke up and realized Giana is the most precious gift they could have ever received. “Giana is our light, our world. We cherish every moment we have with her.”


Though her activities are limited, Giana loves getting attention. She enjoys bath time and music. But if she is annoyed at her twin brother Dominic, she doesn’t hesitate to let him know by rolling her eyes.
Doctors aren’t sure what is in Giana’s future. The family is taking it one day at a time and already, this beautiful Tiny Light has surpassed the odds. “Live life to its fullest. Realize that you have to live every day like it’s your last.”


Written by Elaine Yong

Kensey's Story

Images Captured by Kate Mahaits Photography

Tiny Light Kensey has gone through a lot in her first year of life.  She was born three months premature, which meant numerous blood transfusions, antibiotics and a ventilator for two months.  This determined fighter also underwent heart surgery and required a chest tube.

It was difficult for the family to be away from home for so long while their baby girl was in hospital, but the day Kensey came home was very special. Now, this happy little girl gets lots of cuddle time with mom and dad.  She loves being outside and going for car and boat rides.  It’s easy to get giggles out of Kensey with her ticklish legs.

Parents Colette and Scott have advice for other families going through difficult medical journeys, “Stay positive and make friends with other parents who have gone through similar circumstances.”

This Tiny Light has a bright future ahead and should require only minimal assistance with occupational therapy and physiotherapy.  “We love Kensey very much and look forward to many happy years and memories together.”

Story written by Elaine Yong

Tiny Light Alex

Images Captured By Lifestreet Photography

Tiny Light Alex is happiest when he is surrounded by people, whether at school or at home. Though he can’t talk, he can certainly communicate with smiles, laughter and lots of hugs.

Alex was diagnosed at one month of age with a rare genetic disorder called “mosaic ring chromosome 22q13 deletion”. This means he is missing part of his genetic material, causing both mental and physical development delays. Parents Sharon and Gerhard were stunned, and the news has been especially difficult for Alex’s older sister and brother Stephanie and Marcus to understand.

The tough journey has also brought so much joy to this family. 6-year old Alex loves wrestling with his dad and siblings. He could spend all day at the playground going down the slide and he is learning soccer moves from his brother. His new favourite toy is a special tricycle built by dad. Alex can say “mama” and “dada”, which is beautiful to hear.

Now, it’s impossible to imagine life without this Tiny Light. “Alex is exactly the way we are supposed to be. He does not care if you jump ahead of him in the lineup. You can be angry with him and the first thing he will want is a hug. Imagine this world if we could be even slightly like that. It would be like heaven wouldn’t it?”

Story By Elaine Yong

Meet tiny light Logan

Images Captured by Mercedes Leung Photography

From the moment he was born, Tiny Light Logan has been surprising everyone with his achievements. He wasn’t supposed to survive yet he has thrived. He wasn’t supposed to see yet he does. He wasn’t supposed to walk yet it’s now impossible to slow him down. This determined boy has shown everyone how each moment is so precious.

At 8 months of pregnancy, parents Renee and Alan found out their baby’s brain never fully developed in utero. Doctors urged them to terminate because they did not think the child would survive long after birth.  The family decided not to listen to that advice. Logan was born with a number of medical challenges, including a growth hormone deficiency called panhypopituitarism. He also had hydrocephalus – a buildup of fluid in the skull – and he was blind at birth.

Logan is now 12 years old and succeeding at school. He has mental and physical challenges, but he never gives up.  “He goes through his surgeries with such strength and hope. It teaches us such important lessons about life.” Logan also brings so much laughter to his family with his wicked sense of humour. This funny guy loves to use his imagination to play pretend, spend time outdoors and help out with chores.

The future is a great worry for Logan’s mom and dad. They hope their son leads a full life surrounded by happiness. Already, this Tiny Light is doing just that, one small success at a time.

Written by Elaine Yong

Anthony's Story

Images Captured by Gabi Moller photography

There is only positive energy allowed in Tiny Light Anthony’s life. His family has even adopted an uplifting motto - “good times are coming one day at a time”. 


After a normal pregnancy and delivery, at just 3 days old, Anthony had a 7 minute long seizure. His parents were devastated to find out their first child had suffered a stroke in utero. Even now, doctors still aren’t sure of a diagnosis or what the long-term future holds. 


Anthony has developmental delays affecting several parts of his body. He has a form of Cerebral Palsy, which means he can’t walk, sit or crawl without support. He needs to be tube fed through his stomach. His vision is impaired and he is non-verbal. Anthony is on a cocktail of medication to control epileptic seizures. 


Through it all, this lovable 5-year old can’t get enough hugs and kisses. He makes friends everywhere he goes. He has taught his family so much about compassion and unconditional love. “My little man NEVER gives up on life…so how dare I give up on him?” 


His parents are committed to giving their beautiful boy the best life possible. The family home has been remodeled to make it wheelchair friendly, including an elevator at the side of the house. “Anthony is here for a reason. We might not know why this tragedy happened or why he is here, but his story is not finished yet and is still continuing.”



Story By Elaine Yong

Carson's Story

Images Captured by Cormack Photography

That big beautiful smile hides a mischievous side of Tiny Light Carson.  Turns out this 6 year old is a thrill seeker who likes sledding and rides that spin.  And for his parents Ronan and Shyla, Carson’s journey has been a whirlwind too.


Three weeks before his due date, an ultrasound showed enlarged ventricles in Carson’s brain.  Shyla says, “The hardest time of our lives so far was when we were forced to contemplate what life would be like without our precious child while he fought to survive several life-threatening seizures and respiratory infections.”


It took four years and many genetic tests before doctors were able to diagnose his extremely rare condition.  Carson has 1q 44 terminal deletion, which means he is missing genetic material at the end of his 1^st chromosome.  He lives with a global developmental delay, a seizure disorder and a swallowing dysfunction that requires him to be fed through a tube.  


The family has not just survived, they have thrived.  Carson is loved by everyone who meets him and he serves as inspiration for the entire community.  This Tiny Light is making big strides – he just learned to walk in August.  His parents have big hopes for their affectionate son.  He now goes to school with his big brother…maybe they’ll graduate high school together down the road.  “We spent the first few years not daring to dream, but now we are strong and so is our vision for Carson’s future.”


Written by Elaine Yong

Kayden's Story

Tiny Light Kayden could be Lady Gaga’s youngest fan. He’s not even 3 years old yet, but he would make the superstar proud – behind the beautiful smile, this little boy has a thing for shoes. Every time he goes into a store and sees shoes, he wants a new pair!

Kayden has already defied the odds. He has a very rare complex congenital heart disease called Right Atrial Isomerism. His heart has five defects including a large hole between the chambers, and he was born with no spleen. Kayden was diagnosed at the 20 week ultrasound, heartbreaking news for first-time parents Jennifer and Steve.  They were told only two children a year in Canada are born with this condition. The survival rate is 50%.

Though doctors are unsure of Kayden’s future, he is healthy right now. At 8 days old, he underwent risky open-heart surgery. Just a week and a half later, his mom and dad took him home. “He has been through so much but always has a smile on his face.” Kayden is on daily medication for his heart and to fight infection due to having no spleen. He will need another open heart surgery within the next year.

This Tiny Light is too young to understand his heart issues, but his mom and dad tell him he has a special heart. Kayden isn’t letting anything slow him down – he loves playing outside, or having fun with his toy cars and tricycle.  “I hope he lives a good life no matter how long it may be.”

Written by Elaine Yong

Bentlee's Story

Bentlee is only a few months old, but this Tiny Light has given her parents the strength to look forward to the future.  She has also become her big brother’s best playmate, spending lots of time together with her favourite toys.

Diagnosed in utero at the 18 week ultrasound, parents Jamie and Chelsey were told their daughter has one of the most complex heart defects – Bentlee’s heart only has one ventricle instead of two and both her major arteries are switched.  It is very hard on the heart to get oxygenated blood to the whole body.  Her pulmonary artery is also narrowed, restricting blood flow into the lungs.

Bentlee will require a major heart surgery in the next month or two, and then another surgery when she is a toddler.  In between, there will be dozens of tests and appointments, and possibly a few smaller surgical procedures.  Doctors have no idea what a life span is for Bentlee.

Her parents weren’t sure they would be able to cope when they first found out about Bentlee’s condition, but this Tiny Light has brought the family even closer together.  “We just try to stay in the present and love her and treat her like any other normal baby.”
 
Written by Elaine Yong

Vienna's Story

Images Captured by Baotran Pham Photography 

Little Vienna may be only 4 years old, but to her parents and big sister, this Tiny Light has opened up a whole new world of joy and wonder. 


Diagnosed with Atrioventricular septal defect (two holes in her heart) and Down syndrome while in utero, Jennifer and Joel were determined to learn as much as they could about their baby girl’s conditions before she was born.  Since then, Vienna has had numerous hospitalizations, dozens of doctors appointments, open heart surgery, and hours of therapy.  But that hasn’t been the toughest part of the journey for this family.  They have faced an uphill battle with friends and family who haven’t known how to cope with Vienna’s diagnoses. 


Along the way, this beautiful girl has constantly amazed her parents.  “I have never seen a child enjoy life and the little things as much as Vienna.”  Her eyes light up when mom and dad sing “Itsy Bitsy Spider”.  She cheers for her big sister’s soccer team by shouting “Go, go, go!” Even after a long day at the hospital, Vienna is full of laughter.  And she loves snuggling into mom’s shoulder at night. 


Her parents have so many dreams for Vienna.  “If you focus your energy on what your child is not doing, you may miss out on something amazing your child is doing currently.” And no matter what path their daughter chooses, their most ardent hope is she will be surrounded by genuine caring people who accept her. 


Written by Elaine Yong